By Nira Rittenberg

Caregivers are incredibly busy in their role of helping the person they look after. It is the job they have taken on, whether by choice or necessity. Dementia care can be all-encompassing work, from the practicalities of the daily routine (dressing, eating and bathing) to the tasks of shopping, financial management and managing appointments and medical care needs.

As anyone who has been – or is – a caregiver to someone with dementia can attest, all of these tasks are just a small slice of the practical and emotional work that goes into caregiving.

The Stress of Caregiving

Within a family unit, several people may be involved caregiving, but there’s usually one primary caregiver who is the main coordinator. According to the statistics, in most cases, it’s a spouse, and if present, they’re supported by daughters or daughters-in-law.

Family members who provide care to individuals with a chronic illness like dementia are themselves at risk. Emotional, mental, and physical health problems arise from complex caregiving situations and the strains of caring for frail or disabled relatives.

Caregiving does take a physical and mental toll. Some studies show that older spousal caregivers (aged 66-96) who experience caregiving-related stress have a 63% higher mortality rate than non-caregivers of the same age.

What happens when the primary caregiver dies first?  

Death of a Primary Caregiver

In CBC doc, The Caregivers' Club, one of the primary spousal caregivers dies while taking a much-needed vacation.  

Their daughter says, “I never took the time to just kind of sit with him and go through this stuff. ... They're very different losses to experience. My moms came in bits and pieces so it was a little bit easier to deal with, whereas it felt like my dad was just instantly ripped from our lives.”

The death of caregiver can have a serious ripple effect on the whole family structure and often requires an immediate, crisis-oriented response.

There is no single solution, but the care needs of a person with dementia are immediate, so there is no opportunity to “wait and see.”  Financial resources may determine the path that is most appropriate. To complicate matters further, the family members may not all agree about the choice of options (e.g., full-time caregiving vs institutionalization).

They're very different losses to experience. My moms came in bits and pieces so it was a little bit easier to deal with, whereas it felt like my dad was just instantly ripped from our lives.

Caregivers who have devoted specific time to support a primary caregiver may suddenly be forced to see if they can juggle more in addition to other life demands like jobs or childcare.

Impact on the Individual with Dementia

Depending on their level of awareness, the individual with dementia requires a lot of support throughout this ordeal, as their world has shifted on a practical level (with a new routine, new home, etc.) and the visceral awareness of the sudden absence of their longtime caregiver.

Most experts suggest that the individuals with dementia be allowed to partake in the funeral to grieve in whatever way they can depending on how much they’re able to understand what has happened.

The use of clear language and speaking in the past tense is important in helping them understand that their primary caregiver has died. The response of a person with dementia may vary from talking often, or not at all, about the person who has passed away. Physical and emotional support is often helpful.

Have a Succession Plan in Place

Families who are forced to deal with the death of a primary caregiver wish that they would have planned for this unforeseen eventuality. Most caregivers are so consumed with the day-to-day job of living and caregiving for their family member they don’t think about what will occur if they can’t do the job or are not there at all.

It is vital to have a succession plan in place.  Sitting down with adult children and other potential key players is important. If feasible, the person with dementia (if it is still early on in their illness) can be part of these difficult discussions. This forum may allow for an awareness of concerns, personal wishes and possibilities. Financial planning and support can then be organized.

Finding Support

The emotional grief that families must deal with when losing one family member to dementia while simultaneously losing another to another illness or sudden death seems almost too much to bear.

Support in the grieving process as well as in the daily routine is a necessity. Family members must be kind to themselves as the grieving process is complex, especially under these conditions. Professionals should ensure maximum supports, both professional and personal, are made available to all.

As with any grief, time is usually the best healer.  Recovery from the loss implies finding the “new normal” and learning to live with a new reality.

Nira Rittenberg is an occupational therapist who specializes in geriatrics and dementia care at Baycrest Health Sciences Center and in private practice. She is a co-author of Dementia: A Caregiver’s Guide.